Definitions wihtin the Indian context

The following is a brief discussion on the introduction of the Indian thinking on disability as it is reflected in official documents. The first official document to mention disability was the landmark document on education or the NPE 1968 which was formulated as a result of the Kothari Commission (1964-66):

The use of the word handicapped is now seen more generously, especially in light of the WHO definitions, however, we must also remember that the Indian documents have been using then and since various terms inconsistently. This was followed by the next NPE that is of 1986, which in addition to the first paragraph also added two small sub-sections which are rather instructive from the following perspectives:

• the first sub-section on mainstreaming for children with motor/ mild handicaps has an interesting implication that special schools are to be preferred for other handicaps
• secondly, in response to the word 'voluntary' in the second sub-clause, it is realised that there is an attempt in this document to not only recognise the work done by the voluntary/ NGO sector in this field but also perhaps the Government cannot do without their help especially in utilising their network. It is clear that various such organisations for good or for bad, for charity or for some other reason, went into working for the disabled much before government even thought about it.
  

So the second point is the new finding where given the nature of the field and the history of intervention that NGOs have made, the official government recognition of that work is made explicitly.

Women's education
There is a rather huge contradiction that pervades much of our policies needs to be pointed out. It was really great to know that as early as 1948-49, stalwarts like Radhakrishanan and Maulana Azad had prepared this great document called The University Education Commission Report:

The first statement shows what great and beautiful minds are at work and what a grand vision they had as early as 1948, but the strategy of "special courses" and "redirection of interest" shows how the door though now opened for women's education is only for entering one particular (and rather small) room only. Himangshu Rai preferred a more generous interpretation where this attempt on the part of the Commission can be seen as one way of at least starting the beginning of women's education in a country where this has been always lacking. Neha and Deepika thought that this was too generous a reading, echoing my thoughts exactly -- when emancipation, a 19th movement has been around for decades, these learned men were quite likely to be aware of it and the need for it, yet they chose to restrict women's education only to certain fields. Rakesh also pointed how Gender is a construct at least since 'Second Sex' and the statements above limiting the role of women as care giver can be seen in this light.

I also fault these stalwarts on count of not thinking of PwDs, especially when they had separate sections on education of economically disadvantaged groups, backward classes, and minorities. However, we can say that the NPEs more than compensated for this lacuna.

Programme of Action 1992 and Other Progammes
In fact, the POA (which is independent of the Review Committee report of the NPE 1986) is a greatly detailed document about the education of PwDs. I also pointed out how POA is an intermediate stage between documents like NPEs and Acts (like PwD), still they are not valid in the court of law. It took a long time to turn these policies and POAs to an Act like the PwD and then recently the RTE. In between, we had three important programmes, viz., IEDC, SSA and IECYD. Among these, in the two IEs (Integrated Education), I showed how the expansion of 'I' changed from 'integrated' to 'inclusion' -- a major step no doubt, but how much of it is going to turn itself into an Act?

Disability as 'Pathology'

Today the question before us is, whether or not to include disability as a subtheme of disease. The issue arose from attempts to treat disability as a pathology. The example from UN discussion forum clearly seems to go for including disability within NCDs or non-communicable diseases:


So the debate shifts -- whether disabilities that result from diseases (esp. NCDs) are to be treated as disease or not. However there was confusion about this point. And this confusion arose because of the undeniable fact that whether it's disability as a result of a NCD or not, it's still a disability. This confusion was allayed upon further discussion in the class -- now that we know the figures (90% in developed countries and 50% in developing countries of disability is from some disease whether NCD or non-NCD) then the question is whether it's OK to say that disability mostly is a disease or to say that due to the following reasons, it's not:

(i) since disability is a social construct like gender
(ii) since disability is a continuum(iii) since disability is seen as an alternative 'being'
(iv) since what we are trying to do in this class is to learn that disability is also a concept.

Point no. (iii) above is brought out very nicely in the following email in the context of the above UN statement:

So the debate continues and it has to be constructed by all who participate.

We also saw how the 2nd type of definitions, ie, research definitions are quite different in their coverage and in their area of application from Type 1 definitions. The research definitions point toward an alternative concept of disability that is in tune with viewing it as construct and as a way of being.

We started then with the origin of the concept of equality for persons with disability in the Indian context. I showed how it arose first through concerns of education for the disabled persons. In fact, it was early as 1968 (or 1964-66, if we count the Kothari Commission reports) the National Policy of Education in India covered disabled persons. In the context of the awareness world over about DPs that time, the 'handicapped' which was being put to use. And in light of the later definitions that emerged as part of the ICIDH by the WHO 'handicapped' in this context can be seen as disabled.

So it was visionary document and it was early enough. However, we noted -- and there was a lively debate on this in class -- whether special schools or integration is the answer. There is obviously much more to say in this context and we will discuss this in detail later, including my recent work on this.

Three As

In today's class we started with the place of 'public health' as somewhat in-between 'Admin' and 'Clinical' group -- all three are of course a part of Type I of disability definition. First, we discussed how public health may be related to disability and why governmental agencies will be interested in epidemiology or distribution of disability. By studying distribution, prediction of prevalence and incidence can be made which can be used as an important tool for governmental policies.

This took us to DALY -- an important measurement of quality of life. We saw how ranking of various disability is expected to change by 2020.

Then in this context, we further discussed other statistical measures, like the very well known ICIDH, the definitions of impairment, disability and handicap that the Pwd is based on. After this, we went on to a critique of ICIDH and launched the discussion of how disability is seen in some well known sectors (like the UN!) as a disease or as a pathology. There is of course more to come --- the debate we started today is exactly this: How far justified it is to view disability as a disease and what are its consequences. I'd like everyone to think of this issue, it's not a simple issue, there are many sides to it.

The point that needs emphasising though is this -- the dominant project of normativity is so deeply rooted in our minds (mostly through our schooling and family) that we will need to make a real effort through (i) awareness (ii) acts (iii) access, I call the Three As, to understand that we cannot guarantee equal rights and equity as long as we see this world through difference.